Group of people sitting and talking

My Experience as the Leader of an Adult Autism Support Group


I have written extensively about having pets. I have written about adults on the autism spectrum and employment, volunteering and living on our own. One issue I have not written about yet is running an adult autism support group. Well, here goes!

First of all, it is not easy for me being the leader of such a group. I took on this position when our other leader decided he wanted to be a naval reservist, which is a terrific career. Because I was the only remaining original member of this enterprise when this group first formed back in 2009, I was the only person in the group who could do this job. So now I am holding the new leadership role for this group. I feel it is important to be friends with each of the members of our group, old and new. I also have to keep the peace between a few of the members who do not see eye to eye with each other at the meetings.

My other hat is the Chairman of our guest speaker series. I am the one who gets guest speakers for our meetings to get our voices heard and to let these guest speakers know we are here. I have been very successful in this endeavor. I have gotten speakers from all over — state senators, a justice consultant, an officer of the law and his K-9 patrol dog, and many others who work in the autism field. I am also the person in charge of putting things on our website called “Oasis,” which includes information on our group meetings each month and group activities such as going to museums, picnics, touring battlefields, etc. I also have to find out what members would like to go on these adventures and also who needs transportation to and from these adventures. I also have to contact our van driver for those who need this service of transportation.

I take this responsibility seriously because our local Autism Society is looking to me to make this group a success, which I guess I have done, as this year I was the recipient of the Dennis O’brien Autism Advocacy Award. I hope I have given you a glimpse into what can go into running a support group.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by g-stockstudio

RELATED VIDEOS

The Moments I'm Thankful for as a Person With Autism


I have autism. I’ve had some amazing moments. I got pop singer Elton John’s autograph, got county and pop Shania Twain’s autograph, graduated college; the list goes on and on. I felt after a certain time that I should be grateful I had some of these moments and thank the places that were a part of them. I started to write thank you letters to the venues where some of these moments took place.

I had multiple wonderful moments at an arena in my area. I wrote them a thank you letter telling them about it. That arena is where that Elton John moment happened, my college graduation, and the 900th episode of WWE Smackdown. After I did that, they responded with a letter saying thank you and were grateful that they have been a part of some of my greatest life moments. They also sent free hockey tickets, WWE merchandise, and tickets for another event.

I also wrote a letter to the Warner Bros Studio Tour I visited in California thanking them for the experience. They wrote back saying “glad you enjoyed the tour” and sent a free tour guide. They also said if I already had one, to give it to someone else. I didn’t have one, so I kept it.

If any other people with autism have had amazing moments at a certain place, I encourage you to write them a thank you letter. You never know what it might mean to them!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Azri Suratmin.

How I'm Working Towards My Full Potential as an Autistic Student


For people like me who have autism spectrum disorder, meltdowns and shutdowns are usually either part of mental or emotional overloads. “Overloads” are when the overstimulated brain
of the person receives too much stimulation to actually continue processing incoming stimulation, causing the person to panic, have a meltdown, “shut down,” etc. As I stated earlier, this can happen either mentally (due to outside stimulation like movies, videos, music, light patterns, strong smells, too much bodily contact, etc.) or emotionally (too much social interaction at once, or too much emotional response at one time). Sometimes it is a combination of both.

As a child who has overloads “gets better” at handling information, it is not necessarily because they are better at handling the stimulation itself, but it happens gradually as they are slowly exposed to more stimulation over time. Some people are better at handling the information because they have trained themselves to quell the reaction, but the reaction is often still there, just unnoticeable due to its small size. If the over-stimulation continues for too long, the person may gradually (or sometimes suddenly) increase the severity of their reaction.

As an example (using myself), I can watch action-packed 2D animated (such as anime) movies, like “Castle in the Sky,” but have a really tough time when watching movies acted out with real people or realistic animations, like “Avengers,” “Spiderman” or “Batman,” or even documentaries. However, I can play non-gore video games with complex controls, movie clips, and dialogue with very few problems at all.

Also as an example (still using myself), I often became non-verbal in response to emotional over-stimulation, which made me a target for bullies, because I couldn’t speak up for myself when they lied about what happened, nor could I tell the teachers what had pushed me to the point of
over-reaction. Once I received a suspension for my behavior because I was only able to tell my parents what had happened after the fact. Because of the elementary school’s inability to revoke punishment or revisit an offense and their need for instant information about the incident, they never heard nor bothered to think that the other child was at fault for attacking me repeatedly before I defended myself. So I had one of the worst elementary school experiences. I even switched schools in grade 5, but to no avail, as the new school had the same amount of (if not more) bullies than the previous elementary school.

After a lot of training, mostly involving written exercises and social scenarios and whatnot, I was finally able to control/redirect my reactions, and was able to tell the principal about the repetitively mean bullies. The school eventually put “bullying” on those children’s permanent
records, and they began to leave me alone (most of them, anyway). But that was after I had switched schools, gone to multiple ASD social group sessions, and was past grade 6, where there was no possible seating plan available without a bully sitting next to me. Not only that, but there was still very little support for ASD in elementary school.

High school was a lot better, as there were support programs in place, including IEP, a reserved resource room for program participants, and class presentations that informed the class about autism. Better yet, the teacher of the resource room became a personal role model of mine, having me pushed just past my limits in the classroom before pulling me out to the resource room to “simmer out” the overload. He had a good analogy for this, too. A soccer coach puts his player on the field, then only pulls him off when he knows for certain that he will not be able to play, because the player cannot be put back on the field afterwards. In other words, they have one shot at participating in the classroom each day, and if they are able, they need to participate, but if they are unable, they will need to be “benched” for a while.

He also provided exercises including examples of situations I had trouble with and a lot of long or hand-drawn answer spaces. After completing an exercise, the teacher would go over my answers with me. He actually became one of my best friends in high school, as did the other ASD students in the program. The teacher would also explain why I had to do the stuff I did, and why I was being pulled out of class, why I had to do the exercises, and also explained how to do things properly in social and other circumstances.

However, there are a lot of people with ASD without a positive role model in their lives. If anything, there are many people with ASD who either have no role model other than themselves or have a negative role model in their life. There was another part of the program in high school that got our classmates/peers involved in helping us. That helped a lot, as we began noticing our own limitations and set expectations upon ourselves to improve.

Some parents worry throughout elementary school so much that they are afraid of what might happen in high school. To those parents, one of the best thing that can happen is finding a support system your child is OK with, and is supportive of both their future and self-advocacy. I desperately hope that the support systems that have helped me throughout high school and college will spread through the chain into both adults with ASD (getting used to budgeting, finding work, running a household, paying bills, etc.) and children and elementary schools with ASD (helping protect from bullies, as well as teaching social skills, finding help from teachers, educating classrooms and teachers about autism, etc.).

There is too much unaided autistic need in today’s society for many to live up to their full potential. Even I have not reached it yet. But now I at least know I need to keep trying, altering my method and process as I go along, finding as much help as possible, until I succeed.

We want to hear your story. Become a Mighty contributor here.

Photo by contributor.

13 Things I Want My Son's School to Know Because of His Autism


If you are a parent of a child with autism or a disability, you know the tug-of-war between the school and the parent is real and can be stressful. The IEP meeting every year is something many of us dread. You might attend seminars, ask for ideas in autism groups online, read various tips and tricks, try talking to a family advocate and gear yourself for the meeting. I’m guessing the school ,on its part, does a ton of meetings and collaboration to come up with an IEP they believe is practical and effective. Same goes for almost everything that involves your child and the school. There seems to be a constant back and forth trying to figure out what is best for the child. While every school year is an opportunity for the students to grow, it is also an opportunity for the teachers to learn more about the kids who need that extra attention because of their challenges.

If I was asked what I would want the school to know about my child and autism in general, this is what I would say:

1. My son is more than just an IEP. What can be a set of guidelines for a student in your eyes is what we see as the stepping stones to a better future for my son.

2. I wish you knew how awful it feels sitting in a room listening to teachers and therapists talk about all my son is incapable of doing. I wish you could feel my pain. It would be encouraging if you also listed his strengths and achievements.

3. It may not appear so but I really do appreciate all you do for my son every day.When I see progress in him , you are the first one (after his dad) I think about who would be proud to hear about it.

4. When I fight for every single of his therapy minutes, I don’t just do it because I can. I fight for it because I think you can. I want more of your time with him.

5. You might think my son’s more than normal tardiness and absence has something to do with my inefficiency, but my son has a sleep disorder and although I might not be able to get a medical diagnosis for it, it is an actual problem. So, when my son is late to school or misses it, chances are he had a sleepless night and he is catching up on it in the morning before he comes to school. I’m actually doing you a favor by not sending a sleep deprived , cranky child to school. Please don’t penalize him for that.

6. When I ask you too many questions about my son’s routine, it’s not because I’m trying to interrogate you. It’s because I’m trying to find out how his day was. My son is nonverbal so it helps to get additional information from someone who has been around him during his day at school.

7. A chewy tube is not the solution to all his problems.

 

8. Not all aggression is bad behavior. For a nonverbal child aggression might be a way to express their angst, or tell you they are sick, they want to be heard or just an expression of their helplessness to articulate themselves. There can be a million reasons why a child on the autism spectrum is “acting out.”

9. When you sit around a table discussing my son and say he might never be able to even write his name, you might think you are doing me a service by showing me the harsh truth, but honestly, you just lost my confidence in you and your commitment to my son’s development. If you don’t believe in my son, who will?

10. Many autistic kids line up toys, stim, have some kind of sensory issues or have social awkwardness. In spite of all these similarities, each autistic kid is different. You may think what works for one will work for all, but it might not. That’s the challenge of working with an autistic child.

11. I really admire your patience working with a child who will take a longer time to show you results of your hard work, if they do at all. I appreciate the fact you do not relent. You smile and deal with his meltdowns and work through all of this to ensure he has a productive day at school.

12. Please don’t have a a classroom for kids with disabilities and the associated resources because it looks good on your school’s resume. Have it because you want to really help our kids out. Have it because you want to invest in them, in their future. Have it because you are as proud of our kids as you are of the rest of your students. Think about them, because when we send our kids to you, we trust you with them. We trust you with their emotional, physical and intellectual well-being. They might not be able to stand up for themselves so please stand up for them — in the classroom, in the corridors, in the bathroom, in the cafeteria. Let the rest of the school know our kids are in no way a subject of ridicule and they deserve the same respect as the rest of the kids in the school. Please.

13. Last, but certainly not the least, is the pressing need to educate other students about the importance of diversity, acceptance and inclusion. I would love to see the school coming up with programs to teach the rest of the students the value of inclusion. Special needs classrooms, adapted physical education and field days exclusively for the kids with disabilities are wonderful ideas but they also tend to create a distinction between our kids and the rest, creating a feeling of “they are different” and “not part of us” in the impressionable minds of students. So it is of utmost important to ensure students are taught to be enablers and a friend.

Every time a parent of a child with a disability decides to homeschool their child, it is a loss for the schools. It’s also a challenge for the education system to rise up to the challenge. Together, the parents and the school can change the experience and shape the future of every child with a disability who is waiting to be the extraordinary person they are meant to be.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by monkeybusinessimages

Silhouette of a couple at sunset.

Our Journey With Gender Transition as an Autistic Couple


My wife and I are autistic adults, but both of us were diagnosed late in life and after, or alongside, a history of mental illness. We first met in the U.K. when Beatrice came to be the au pair to the family in whose home we were living. I emigrated to Australia, with my family. My mother, sister and aunt lived there already. Beatrice wasn’t granted a visa for permanent residency for a further seven years after I left the U.K., so she commuted between Switzerland and Australia each year for several months, until she joined me in 1991 in a bid for permanency. That year the government of the time issued a visa category for inter-dependency couples. This was particularly pertinent to same sex couples.

We have been together through a lifetime of change. We met in 1984 when as a woman, I was married to Dave, my then-husband. Dave and I had four children together and as committed Christians, we were very active in our local community. Our marriage relationship struggled and was deeply troubled by the vast differences in our upbringing, education, marital values and life expectations. Dave came from a family of seven; having five sisters, he had very definite views on a woman’s role in a marriage. Over time this view proved to be detrimental to our relationship and Dave’s emotionally abusive disposition, quite misogynistic in my experience, caused me to move into a deep depression.

Even though Beatrice was nearly 12 years my junior and didn’t speak English when we first met (she was 20 and I was 32) it soon became apparent that there was chemistry between us and an unspoken understanding, despite our cultural differences.

“Yes, Wenn was unlike anyone I had ever met. This individual seemed competent, capable and compassionate and I couldn’t get enough of our times together.”

After only three months our relationship had moved up several notches. When we were writing our book together, some 33 years later, (Transitioning Together: One couple’s journey of gender and identity discovery) it was quite distressing at times to look back and remember those beginning times. There was lots of confusion, lots of fear and lots of guilt.

“Initially, all those years ago there was also some anger because I was cross that Wenn wasn’t male. It just felt all wrong that I should be falling in love with a) a married woman who had four children and was almost 12 years older than me; b) plus, as a Christian I felt God would be angry with us too, because same sex love wasn’t uplifted or celebrated in scripture.”

We both had quite rigid beliefs and Beatrice, being from a strict Catholic family, had more fear associated with our developing relationship. I felt a sense of disbelief and unreality at the same time.

As an established author now, some 33 years later, I am used to writing in my own time, my own way and in my own style. I rarely go over my writing and re-write a piece, unless my publisher requests it. Writing with Beatrice, however, not only stirred up lots of memories, it also showed how different our styles of putting words to paper were. I write almost faster than I think, while Beatrice thinks over what she wants to write, plots how it interjects with the other things she is saying and revisits her thoughts many, many times. Our differing styles brought up lots of conflict as we tried to write together!

I was keen to get the gist of our story and to elaborate upon our experiences. At times Beatrice found this too confronting and felt her privacy was being invaded. Beatrice is a very private person and grew up in a very strict and closely-knit family in a small Swiss mountain village. I grew up in an “open house” where strangers were often entertained after closing hours in the pub my parents managed.

Even though both Beatrice and I are autistic, our personalities and upbringing are very different. During the process of writing our book I experienced moments of utter frustration because the writing Beatrice placed into sections for her would change several times. Being satisfied that she had done a great job was a hard balance for her to find. In many ways though, her style forced me to take stock of what I was writing, revisit it and see if I was presenting the story in the best way and representing what we were aiming to say.

“Wenn is always on the go. He is never still and is almost moving onto the next thing before he has finished his present project. I needed to check the dates of things by looking up old letters and old diaries from the time we were writing about. In many ways I was trying to stick to the facts, while Wenn was trying to add a flair to what we were saying to keep the reader interested!”

During the time of our writing together we needed lots of moments to talk, as our memories of some events were quite different. Being able to read letters of the period in question and go over events again was very connecting. It echoed the journey we had been on, the things we felt strongly about and the values we had in common.

Loving Beatrice and sharing life together through raising our children, moving counties, supporting each other through my divorce, ill health and hospital, changing vocations, university study, and ultimately changing my gender is exhausting to think about, let alone write about! The process of developing our book was both exhausting and life-giving. It was a timely reminder of our commitment to one another and to how much work a strong, healthy relationship takes.

Throughout the documentation of our story and the continual conversations needed to put it all together, Beatrice and her commitment to my best never wavered. I always think it’s easy to love her because she is so lovely! However, loving another person who may not like themselves is no easy feat. I say this because Love needs to be reciprocated so it can grow and develop. If one doesn’t truly welcome self to start with, the foundations for acceptance of  “other” can be shaky.

I would like to believe that throughout the process of writing together, for Beatrice, the cement for the foundation of self-acceptance was fortified. Today the relationship we share as husband and wife, as partners in our daily activities and as co-workers in the venture of life, couldn’t be stronger. I think writing our book and co-producing the different sides and aspects of our journey, so personal and so different, has and is serving an ongoing purpose that increases our joy in one another and in the advent of furthering self and together, discovery.

Being autistic has disposed me to living with sensory challenges and my everyday life would not be possible without support for the sensory overwhelm that I experience. For example, I need music turned down low or off if I’m in a café or a taxi. I quickly become overloaded by too much sensory information and social demand.

I was asked if taking testosterone as a trans man had caused any changes to my sensory sensitivities. I haven’t noticed any changes with the sensory system that I believe is impacted by autism for me, but, I have separated out those I thought were influenced by my autism but now think were connected more to my gender dysphoria (GD). For example, I still find it difficult coping with certain sounds and volume of sound, with some types of bright lights and with suddenly noticing something that appears “sudden” even if it had been there already (but un-noticed by me). Before transition I couldn’t bear my chest being touched (breasts) or some other “female” bits of myself. I wasn’t “joined-up” sexually so didn’t benefit from foreplay and lived with a sense of distance from many sensory experiences.

Since transition, Beatrice can touch any and every bit of me… I’m more joined up sexually and can linger slightly longer in a kiss without feeling the sense of “distance” from many sensory experiences, as I once did. I’m more switched on cognitively too, which is a surprise as many trans guys say testosterone makes them feel they are not so “bright” as they were as women. They have more fog in their brain! But, I’m tending to remember numbers slightly better than before, and inclined to be lost less often although still directionally challenged. I’m holding onto general information better too.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Weerachonoat.

atypical poster

What I Found Missing From 'Atypical' as an Autistic Viewer


Netflix recently premiered the first season of its new TV show “Atypical,” about a young man and his family dealing with his autism spectrum disorder. While the show is garnering favorable reviews from critics, it has been a very controversial topic in the autism community.

To start, the show doesn’t seem to have any autistic people working on it, on-screen or off-screen, with the exception of a supporting actor who appears in a handful of scenes. The show’s creator, Robia Rashid, touts her deep personal connection to someone with autism, and states that some crew members have autistic children. Rashid also highlights that she met with a professor from California State University, who had previously worked at UCLA’s Center for Autism Research and Treatment.

Autism advocates replied that this was not good enough. They insisted there needed to be more autistic people involved in the show in order for it to be correct. They felt that Netflix’s decision to audition autistic actors, but ultimately hire a neurotypical actor to play the lead autistic role, was wrong. And they declared that the last thing we needed in entertainment was another weird straight white male stereotype of “mild” autism.

After viewing the show myself, I have to say that there are some parts of “Atypical” that feel right. Sam’s social misunderstandings, his intense dedication to research, an incident in which he knew he was being made fun of but didn’t know why, how he likes to wear the same clothes every day (100 percent cotton, his “favorite percentage of cotton”). But there were other parts of the show I didn’t love, where it felt like we were being made to laugh at Sam’s odd behavior, at his own expense – like the scene where Sam tries and fails to utilize his noise-cancelling headphones on a coffee shop date. I also really disliked Sam’s mother, who was a stereotype of the tragic mom who unselfishly gives up her entire life to support her severely disabled child.

Overall, I enjoyed the series for being a funny family show, but the more I thought about it, the more I realized that the show was missing something. We were getting a lot of the external signs of autism, but not enough of the internal. When Sam was lying in bed after a disastrous first date, I knew he was obsessing over every little thing he had done wrong that night, because I have done that myself. When the soft touches of his date led to sensory overload and an outburst, I wanted to see more of the build-up – I wanted to hear him tell his therapist how much of a struggle it is, to weigh whether it’s better to suffer in silence and try to overcome what you’re feeling, or whether you should say something and make a fuss and risk ruining the moment. There is a lot going on in the head of an autistic person when they’re quiet. I wanted viewers to have the chance to hear more of it.

All of which is a long-winded way of saying that it now seems obvious to me that the show was envisioned and created by someone who knows someone with autism, perhaps very well, but it is definitely not the same show we would be getting with an autistic person, or several autistic people, working behind the scenes. This is why I hope Netflix takes the autistic community’s concerns to heart, and makes a concerted effort to hire autistic writers, and more autistic actors, for season two of the series. I also hope that they try to bring in a character with autism who is female, or a person of color, or someone who has multiple disabilities, because diverse representation in the media matters.

It matters for the same reason that Wonder Woman matters, that Uhura of “Star Trek” matters, that Titus from “The Unbreakable Kimmy Schmidt” matters: people need to see themselves represented in movies and TV. These representations open up the possibility of courageous women, of a black female astronaut, of a gay black man feeling secure in his own skin. We see pieces of ourselves in the world around us. If those representations are positive and true, they can help us to understand ourselves better. They can give meaning to our chaotic lives. They can make us feel less alone. They may even be the impetus for a diagnosis that can help explain a lifetime of social ineptitude.

And while it’s easy to cast a female or minority character in a role that may not have much of anything to do with their gender or race (like that of a doctor or a police officer), representing autism is so much more difficult. Autism is a web of characteristics, not a single, visually-defining feature. Hollywood might be starting off small, with straight white males, but it doesn’t mean representation has to stop there. We will get our multi-faceted autistic characters in time. But it will go much faster if autistic people are included in the process.

We want to hear your story. Become a Mighty contributor here.

Photo courtesy of Netflix.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.